Birthday Surprises

After a lot of feedback from friends I decided to go ahead and buy the ball and hammer toy from Target for Oliver's birthday. And, although it was not the ideal scenario, I took the kids with me on Friday morning to pick it up. I planned to wrap it later and I knew that he would enjoy opening the gift and playing with it even if it wouldn't be a surprise. Well, as it turns out, I was the one in for a surprise. When we rounded the isle into the toy section at Target, Oliver -- who had been riding on the outside of the cart -- hoped down and began perusing the toys. I was busy looking for the toy I intended to buy while keeping Sammy from jumping out of the cart. Oliver then chose a box from the shelf, looked at the pictures for a minute or two, then held it up to me and said: "I want this. I WANT this!" And just like that it was in the cart and we were headed for the cash register without another thought about the ball and hammer toy.

There are a couple of things about the scenario that I just described that make it pretty amazing to me. Consider that 6 weeks ago Oliver wasn't speaking. Also, he has never been the kind of kid that has shown much interest in toys. A few months ago a trip down the toy isle would likely have found him riding in the cart more interested in the lights on the ceiling than in the toys. The toy that I set out to buy cost $15.00, the one I put into the cart, $30; but the real value was priceless to me.

Oliver really seemed to enjoy all of his birthday activities. A few neighbors and friends stopped by throughout the day to sing Happy Birthday, each time eliciting a huge smile from him. He watched me put iceing on his cake and was so beside himself with joy that he was literally jumping up and down. Later, as the family gathered around him when he blew out the candles it really seemed to me that there was no difference between him and any other four year old. And for the first time in his life, Oliver was excited about unwrapping his gifts, did not require assistance, and was actually interested in what was inside.

I always approach any day of tradition or celebration with a bit of trepidation. The things that make those days special for some people tend to throw Oliver a bit off-kilter and so I have to work very hard at negotiating my own expectations. But I don't think I could have wished for or gotten a better day or more reasons to celebrate.

Oh, except for one goldfish that must have swam back to Elmo's house while the children slept. But that is a whole other post.

My Monkeys

Go Here; Watch This

http://sheknows.com/about/look/7438.htm

Small Deeds and Ice Cream

"You really need to teach him that there are certain things that he just can't do inside." This was a comment made by someone who ought to know better but just doesn't quite "get" how unhelpful that kind of advice really is with a kid like Oliver. This is the same person who once told me that there was nothing wrong with Oliver that a little extra love wouldn't cure. And the same person who told me, at the height of my grief last year, that Oliver would suffer for any mistakes I made. And so, she implied, I had better shape up.

Well I guess I did. Shape up, that is. And I learned to stop sharing things with this person, which is a shame because she had been a pretty big part of my support network. And I learned to draw support from people who genuinely offered it and to not feel bitter that those who should have been there for me weren't. Well, ok, I'm still working on the not feeling bitter part. I mean we're talking family here. Siblings who haven't even called in the last year. Friends that I've had for twenty years who also must have misplaced my phone number. And I'm sorry but I just can't catch them up. They just can't jump in now and ask 'so how is everything with you?' Um, we're fine now but let's see, there was that period of time when I was scraping shit off the floor, the walls, the bed, the boy, etc, two or three times a day to the tune of my crying children when we most definately were not fine. Not fine at all. Oh, and did I mention the periods of utter despair but also of incredible, unsurpassable joy? We've been on a journey the past year and I'm not the same as I was. And there is just no way to summarize any of this in a meaningful way for those who kept their distance.

But the thing is, I can't throw the first stone. Disability makes people uncomfortable. I remember a time when a neighbor sat in my living room with her newborn daughter and told me that she was born disabled. I stammered out some kind of response but I really didn't know what to say. There were times after that day when I thought about her and wondered how she was coping but I never asked. I was embarrassed because I didn't know if I could find the right words and I didn't want to offend her. Besides, I thought, she looked like she was keeping it together and she must have closer friends, other people offering her comfort. She and I have become much better friends over the last year. Ironically, she is someone who has offered me a great deal of support and comfort in the wake of Oliver's diagnosis. She came and sat with Sam when I cleaned up during the worst of the poop crises. It was to her house that I went one day when I just couldn't stop crying and didn't know where else to go. She didn't say much but handed me a spoon and a tub of ice cream and we sat there on her couch -- side by side -- eating straight from the box, watching her beautiful daughter play.

If I have learned anything over the last year it is that great friendships are built on small deeds. On finding a way to extend ourselves to the people around us even if it makes us feel uncomfortable. Even if we risk something in the process. I don't believe that it is the thought that counts. Somebody got that wrong. It is the action. The phone calls. The words. And most certainly the spoon and the tub of ice cream.

Anticipation

I can't believe my boy is almost 4! On Friday we will celebrate Oliver's birthday. After his first birthday when I tried to have a smallish party that turned out disasterously I have reinstated the no party rule. When I was growing up my birthday was always a special day because I got a cake the flavor of my choosing (always pink with pink icing), everyone sang the birthday song followed by each of my siblings giving me the number of birthday punches corresponding to my age -- and one to grow on, of course. I could have lived without that last tradition. Whose idea was that, anyway? But it was all part of the fun. Sometimes I got a gift; sometimes I didn't depending on if we could afford it at the time. But I always got a cake and I was always made to feel like it was my special day. That was enough. Nik's family traditions were pretty similar (but without the punches). So that is the kind of birthday that I would like my boys to have each year.

I've been talking about Oliver's upcoming birthday with him for about two weeks now. I talk about how he is going to be four and we count to four together. I tell him that we will have cake (chocolate because I still get to choose) with four candles and that we will sing Happy Birthday. But I'm not sure how much he gets. I know he will like the cake and the candles but will he understand that it is his birthday? That he was born 4 years ago? That it is his special day? I don't think so. And so I have been trying to think of the perfect gift. But anticipating what Oliver will like and what he will ignore altogether is hard.

I went to Target today all set to buy a toy for him that he had played with when we visited a friend with children a few weeks back. It is the kind of toy where you hammer balls into a kind of zig-zag tube. He'll love it, I thought. After all he played with it nearly the whole time we were at our friend's house. But then I saw the box and it said the toy was appropriate for ages 12 months+. So I couldn't bring myself to buy it for my boy who is about to turn 4 years old. And then I just got sad because I couldn't find one single thing in the toy section that I thought would appeal to him. So I think I am going with my original idea: fish. Oliver LOVES fish and so does Sam. Sometimes we even just take trips to Petco to watch the fish for a half hour.

And fish will kind of break me in to the idea of pet ownership. I have been toying with the idea of getting Oliver an assistive dog for companionship and also to help keep him from danger. If we can keep some fish alive maybe that bodes well for a pet of the four-legged variety.

Pass the Popsicles and Coffee, Please

Words. Oh, wonderful beautiful joyful words. And they are coming from my son's mouth. Constantly. All.Day.Long. Prompted and unprompted. He is speaking.

A few mornings ago I found him awake in bed. He turned and looked at me after I greeted him Good Morning and said: "I want coffee." Where did this come from? I don't know. Maybe he has heard this exchange between Nik and I about a zillion times since birth. Come to think of it, he probably thought it was the desired response. But the point is: he said it. And then we were sitting with our neighbors on the front porch (yes, we live on a summer is spent on the front porch with your neighbors kind of street) eating popsicles. Oliver had finished his and reached for mine. I pulled it out of his reach because, after all, it was lime which is my favorite and I didn't want to share. But then he said: "I want the popsicle." So I handed it over. My neighbors eyes just about popped out of her head. She has a daughter, 2 and a half, with downs syndrome who has yet to say even mama, so I know she is celebrating with me. I, of course, was bursting with pride.

And the therapists are all a buzz. At the end of each session they joyfully tell me about his emerging language skills. Of course this is Oliver's accomplishment but it is hard won all the way around. They are as excited as we are for what this means for him.

And it comes in the nick of time. PECS (Picture Exchange Communication System) is taught in something like 5 phases. Oliver breezed through the first two phases in record time. And then he got stuck. Phase three was not so easily conquered. He has been working on it for almost nine months. There have been days over the past few months, many of them I'll admit, when I succumbed to despair. It is a wrestling match with me. I have always believed that Oliver could talk. That he would talk. But the day after day of the silence often made me question that belief. I had thought that PECS would be the vechicle for language acquisition. But no progress and no speech. ... that was rough.

And then: boom. He's talking. So we're chucking PECS. I want to reinforce success. I want to reinforce what motivates him. And at the moment that really seems to be language. So we're switching gears. PECs is out the window and we begin on a verbal behavior program next week.

Pass the popsicles and the coffee; it's a whole new brave world and Oliver is leading the way!

The Great Escape, part II

I never wrote part one of this story. That was before Oliver was diagnosed and other mothers all seemed to have similar stories so I figured it was just my initiation into one of the more frightening parts of motherhood: the lost child. When Oliver was just shy of three years old he decided to play in the puddle on the side of the road at the intersection at the end of our block. We're not sure how long he was gone, probably less than 10 minutes, but someone found him before we did and thankfully called the police. Nik found Oliver sitting on the curb with the man just before the police arrived. Oliver couldn't tell anyone his name or where he lived and that man could have been less benign. It was a wake up call and we have been much more careful since.

Even with the extra care, we've had our share of scares since then but usually it turned out that he was just sitting quitely in an overlooked spot. But last Thursday was different. Nik came home from work and found me in front of the stove cooking dinner. We exchanged "how was your day" and then he looked at me and asked: "Where's Oliver?" It had probably been two or three mintues since I last saw him but the front door was open from Nik's arrival. I bolted out to the sidewalk while Nik checked upstairs. No sign of him. I ran up the street, my heart in my throat. Then, my neighbor, on his front porch waving to me: "He's here. He just walked right in and sat down." I took one look at Oliver, buried my face in my hands and burst into tears. Thank God he was OK. Thank God he went that way instead of towards the intersection. Thank God he went into that house and not the one with the lunatics and pit bull or the crazy old lady who calls the police because she thinks someone is stealing her lightbulbs.

When I got Oliver back home I promptly sent Nik out for a bottle of beer. My day warrented it. Before Oliver escaped I had caught him twice sliding down the bannister -- which from the top is probably about a 12 foot drop. And once I found him with his feet on the ceiling. Yes, the ceiling. He had climbed to the top of his closet and laid down on the top shelf with his feet on the ceiling. Then, when Nik was out getting the beer and I was cooking dinner I glanced out into the backyard to check on Oliver who had been swinging. He wasn't swinging. He wasn't in the sandbox. I went outside and gasped to discover he wasn't in the backyard. All the gates were closed so I started to go back inside to check when I spoted a flash of white out of the corner of my eye. He had just rounded the corner of the neighbors house and come back into veiw. What the heck? He climbed the fence!!!

I would have sat down to cry again but Nik arrived just in time with the Corona. If this keeps up I may need to keep a six-pack in the fridge!

One Year

The one year mark passed without much notice at our household. The night before August 4th I thought back 52 weeks and remembered how I sat listening to all those professionals tell me about my son while I breastfed Sam and pretended that I had to memorize every soft downy hair on his infant head. And then I remembered how I couldn't get through the days that followed without crying. Two, three months I grieved outright, followed by a dull echo, an aching sadness the color of grey winter sky. But those days passed too, unbelieveably. And life has become again routine. So much so that I only thought again about the significance of the day once it had passed.

And indeed, by the time I thought again about what the last year has meant to us, and to Oliver, I had so many things to feel good about that I didn't have time to linger on what has come and gone.

On Saturday morning Oliver indicated that he had to use the toilet by leading his therapist by the hand into the bathroom. Prior to that we spent a good deal of time over the past nine months anticipating (and, disasterously, not) when he had to go. So this was certainly a step in the right direction. The next day we went for a hike but forgot to put him on the potty first. Nik helped him make use of the great outdoors and I was, frankly, surprised that they had any success. Well something about the power of peeing standing up apparently intrigued Oliver so much that since then we haven't been able to keep him out of the bathroom. In fact, he drank so much water that on Monday I counted 4 successful trips to the toilet in 90 minutes. Now when I look around and can't find Oliver there will inevitably follow the telltale sound of flushing!

The past few days have also seen a remarkable increase in his use of language. His vocabulary itself isn't what has me so excited, but rather it is his willingness to speak. There had been times in the past when no amount of prompting, cajoling or pleading on my part would get Oliver to say even one word. But lately he is repeating us -- spontaneously. Of course that is still not communication, exactly, but hey, at least it seems that he is trying to meet us somewhere in the middle. After almost two years of silence I can live with that.

And there are other things that seem like cause for excessive celebration, including an actual moment of interactive play with a little girl named, of all things, Hope. Last night at the library Oliver joined a little girl in play with some barnyard animal figures. First he took the horse, then the cow, carefully repeating "horse", "cow", as she offered them to him and I thought I could literally feel my heart pushing against my rib cage. Then the two of them walked their respective animals through the barn doors, layed them down and made snoring noises like it was some kind of great animal slumber party. Oliver said "bye" and I had to resist the urge to give little Hope a hug when her mother finally called her away.

The other important, amazing bit of progress that has come about is imitation. Imitation, the great building block of learning, is something that does not come naturally to Oliver. But over the last week or so he has somehow learned. Now, if you happened to come by and look in my window one afternoon (which I hope you won't do because my house is a mess!) you might see me call out: "Hey Oliver!" Then, when he glances in my direction, you would see me throw my arms up in the air and, after a pregnant moment, you would see him do the same and then the two of us collapse in a pile of tickling and giggles. If you hadn't been reading along you might not know that neither of those things -- the look or the action -- would have been possible a few months ago.

It has been quite a year. Not a year I ever would have imagined. But still, quite a year.